Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Thursday, December 1, 2011

Waking Man Circa 2012: Exoskeletons By Extension

I find technology magazines and technology geeks to be devoid of any social awareness. I thus avoid such publications with one exception--i like to read about how technology people envision the future. Such predictions are almost always wrong--spectacularly wrong. Think the Jetsons wrong. My son sent me a link to a typical envisioning the future article. I was not enthused but he always has a good reason for sending an article to me. I am interested in not only the content of any link he sends but wonder what inspired him to send it in the first place. As a parent I am interested in knowing how his mind is working as a college student. As lunch time approached today I printed out the link, "23 Incredible New Technologies You'll See by 2021". Imagine my chagrin to read that paralyzed people will be walking by 2012--well sort of walking. This claim is grossly wrong but that is not the point. I now get why there is no chance my favorite invention to make fun of, the exoskeleton, will not go away.

Under the heading The Paralyzed Will Walk there is the proverbial but. The paralyzed will be walking but "not in the way that you'd imagine. Using a machine-brain interface, researchers are making it possible for otherwise paralyzed humans to control neuroprostheses--essentially mechanical limbs that that responds to human thought--allowing them to walk and regain bodily control". A photograph is even included of a man, muscular arms crossed with a skull cap on and hundreds of wires running down his back. Looks to me like dread locks gone wrong! It also sounds a lot like a high end exoskeleton. Deep pockets have been invested in the exoskeleton. What I call the cure industry has embraced this costly idea that has dubious value at best. It made me think how lucky I was to be paralyzed 33 years ago. Modern rehabilitation was being formulated in the 1970s and 1980s and patient care came first. Today things are radically different. Present day rehabilitation is both terrible and wonderful. The truly terrible part is the cure industry that sells false hope and preys upon the newly paralyzed who are fixated on walking. Don't get me wrong, cure for paralysis is a worthy goal as we humans were designed to be bipedal. However a modest bit of research shows we are a very long way from anything that resembles a cure for paralysis. For a practical person such as myself, that means moving on with life using a wonderful alternate means of locomotion--the wheelchair. A spectacular invention that empowers millions of people. In part this is why I hate the idea of the exoskeleton: it glorifies walking as the one and only means of locomotion. This sends a bad message to paralyzed people. Essentially walking is good, wheelchairs are bad. Let's look at it this way and see the folly. Imagine are a paraplegic such as myself. I have the following choice. To start my day I can transfer from bed to wheelchair and go. Time involved less than 30 seconds. Alternatively I can put on a skull cap with dozens of wires and then strap over half my body into "neuroprotheses". Call me crazy but this does not sound like it is an efficient use of time or movement. And here is where culture rears its head. We Americans value technology--the more complex and involved the better. Thus we will dump hundreds of millions of dollars into the exoskeleton but categorically refuse to provide the most basic support services for people with a disability to lead an ordinary life. This makes no sense and many paralyzed people suffer as a result. Needless social isolation and rampant unemployment is the norm. How I wonder can this be tolerated?

I would like to identify something positive about the development of the exoskeleton but have utterly failed. However, there is no doubt in my mind researchers will continue to spend vast amounts of money into the development of the exoskeleton. The reason for this was made clear in the article. Apparently "the same systems are also being developed for the military, which one can only assume means this project won't flounder due to a lack of funding". Great, just great. The real market for the exoskeleton is not paralyzed people but rather its military development. I guess we need the exoskeleton so military men and women can carry hundreds of pounds of gear. Given how insidious the military industrial complex has been weaved into the fabric of American society since World War II the exoskeleton will continue to be well funded. A cash cow even. At the same time states nation wide will cut services for people with a disability with popular legislative support. What a world.

10 comments:

Well written, Bill and makes perfect sense. There is not profit in providing supports and assistance to the disabled. There is much profit potential in creating a robocop type exoskelton....Helping people stay in their homes with assistance does not create an IPO ...what a world!

Phil, There sure is a down side to capitalism that Americans have historically resisted to acknowledge. A profit driven health care system is inherently flawed. I truly feel bad for newly paralyzed people. They are set up to fail the way the system is structured.

guess that is why I like the military medical system even though it is socialism. we gave the same service to everyone and yes I mean regardless of rank. need surgery? you got it, if you didn't there was no profit in doing it so it wasn't done. just preaching to the choir here though, still gets my blood boiling thinking about it!

Although I respect your perspective, I have another that is much more optimistic. I work on exoskeletons to give disabled people an option to add to their wheelchair, not a replacement for it. With all the money that is poured into technology that allows people to listen to music, play games, watch TV, etc. why not celebrate those that are using the same technologies to give paralyzed people the option to stand and walk if they so choose.

sbcallahan, Veterans are the only people in America that get extensive and comprehensive rehab. Older folks are hurt the most, particularly people that have had strokes. A few weeks of rehab and it is off to a nursing home. This is nothing short of criminal

Management, I will admit there is is a limited medical benefit to an exoskeleton. The exoskeleton is not a viable option for paralyzed people as you claim. It is simply too costly and is yet another high end gimmick for the cure industry to dangle in front newly paralyzed people who are too naive to realize it uselessness. As for celebrating technology, I would be happy to do so when I see every person that uses a wheelchair actually gets a wheelchair that is suited for them instead of a cheap clunker insurance is willing to pay for. Sorry, the exoskeleton is a massive waste of limited resources.

I think it's time to look at the exoskeleton from an engineer's viewpoint. This contraption is ridiculously impractical, ludricriously expensive, and a logistical nightmare as well. First of all, the inventors of this gizmo intend it to be worn, but like most hi-tech gadgets, it isn't waterproof. What's the wearer supposed to do when it rains, besides pray that they don't get electrocuted? Not wear it outside? Highly impractical. Second, this gizmo is far too heavy to serve the purpose for which it is intended. All the reports I have on this contraption state that it weighs at least 50 lbs. It's unreasonable to expect a paraplegic or any other person with mobility issues to get up & move around carrying something that heavy. Third, the battery life is only 30 minutes despite the significant size & weight of the battery pack. What are you going to do in 30 minutes? It takes longer than that to put the thing on. These failures on what are very simple, basic issues clearly indicate that the design is fatally flawed. Then, there's the 6-figure price tag, ensuring that almost no one but the one percent would be able to afford this contraption, which is probably just as well, since it's ridiculously impractical & clearly a badly engineered piece of junk that isn't going anywhere except the scrap heap. What a waste of time & money! Bill, as usual, you have written a wonderful column & made many excellent points. Bravo!

There is an article here written by a C4 quad, who says this is invention is only useful for those with upper body control (i.e. not her) who can get themselves into the device and control it with their arms. Many quadriplegics cannot even stand upright, even in a standing frame - their blood pressure will start to drop when they are raised.

There might be some therapeutic use for it as it enables someone to bear weight and exercise muscles (more than in a static standing frame), and there is a psychological benefit in being able to stand upright and look others (who aren't in wheelchairs themselves) in the eye at their own level. But as a way to get around or a wheelchair replacement, forget it.

Cait, As always thanks for the kind words. The design is poor and requires a great deal of programing and practice before use.

Matthew,Thanks for the link. I discovered Life; Paralyzed by Christina Symanski last night. What a morbidly depressing take on paralysis. Of course this is easy for me to note as I do not have the myriad of medical issues that she has endured nor is my injury as high as hers. I was shocked to discover she died December 1. She refused all food and hydration and died in hospice care. This is stunning to me. A real shock. She was a wonderful writer and artist. I will put up a post about her writing and decision to end her life soon.

Matthew, Her death is a social travesty. Stunning that the social supports for people with disabilities are so grossly inadequate. I am so sad. I did not agree with most of what she wrote but the woman could write.